Colon cancer screening for at risk children

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My husband was diagnosed with colon cancer (stage 4) in 1998 at the age of 34 and had a total colectomy at the University of Pennsylvania. He had chemotherapy twice. He has been cancer free, even though he continues to find occasional polyps in his upper GI. We have three kids ages 15, 12, and 5. The 15 year old girl had a baseline colonoscopy. The results were a small irritated bump in the colon that as we were told would require Asacol for life, even though she is completely asymptomatic. We do not agree. Our 12 year old son is now going to get a colonoscopy. He does have "symptoms., but we are not sure if we will go to same doctor. What studies should we be involved in as far as colon cancer screening, genetic testing, etc, and who would you recommend for this?

Timothy C. Hoops, MD, Clinical Assistant Professor of Medicine in the Gastroenterology Division at the University of Pennsylvania and Director of Gastroenterology at Penn Medicine at Radnor, responds:

I cannot comment on the details of your family's care at this point as I really don't have sufficient information. I am glad that your husband has done so well despite having been diagnosed with such an advanced colon cancer. I can't tell from your note, but I wonder whether the total colectomy was done because of a diagnosis of familial adenomatous polyposis (FAP) that is characterized by early colon cancer and numerous colon polyps. It can also lead to polyps and cancers in the upper GI tract.

If that were the diagnosis, then it is appropriate for your children to begin screening when they reach about 12 years of age. This could be done with a flexible sigmoidoscopy or a colonoscopy. It should be done every couple years.

If this is FAP, genetic testing can be done on your husband to see if the gene responsible for FAP has an identifiable mutation. If that is shown, your children can then be tested to see if they carry the gene. (If your husband has the gene, they each have a 50-50 chance of inheriting that gene and having the same disease.) If they carry the abnormal gene, they will need to proceed with the screening. The goal is to identify the affected family members and then treat them before cancer develops. If they don't have it, they do not need the screening. I assume from your email that you are local to the University of Penn area. If so, we evaluate people for this genetic testing in the GI Cancer Risk Evaluation Program at the University of Pennsylvania. You could make an appointment by calling (215) 662-4740.

As to pediatric gastroenterologists, the CHOP Division is excellent and I would recommend anyone there.

Finally, I would have to see what the pathology was on your daughter's biopsies before making any recommendation regarding long-term therapy.